It's Just A Bit Aggressive

Last morning I woke up with a husky voice, today none at all.  I could make gruff noises, whisper quite coherently but not talk, at least not in human.  I think this gives an idea how aggressive this thing is.  No small change every few days.  The radiotherapy doc noticed that the tumour has increased significantly from the scan he saw barely a week ago, so have moved the radiotherapy forward to this Monday.  I'm quite happy with that as I want it zapped.  He is worried about the amount of radiation its going to take to have a chance to clear the left lung (I think it is the left one).  There isn't any choice really.  Unless the main mass shrinks, it'll have burst out my chest aliens style before there'd be any chance of being ready for the stem cell procedure.  My current set of doctors/consultants at Wexham just seem to want to keep me down.  I had to go in today and give blood.  I was hoping to see my normal consultant, who the consultant/doctor dude from Hammersmith, who we saw yesterday, would have got in touch with and brought up to speed and set on the task of coordinating donors.  Anyway, he wasn't there and I got to see another doctor, she was okay until she started talking about all the different things that could go wrong before even getting to the stem cell transplant and that it was very low chance statistical that I'd get there.  Bloody marvellous.  I think I'm only going to listen to the Hammersmith doc.  So far this week I've spoken to three doctors.  Two from Wexham (first of whom depressed me so much I broke down in tears in their office), the Hammersmith doc who filled me again with hope yet tempered by the possibilities, risks and dangers and a final Wexham one who pissed me off again.  Just tell me the path is fraught with potential issues and dangers and leave it at that.  I don't want "very low chance statistically".  One sounds hard but worthwhile, the other sounds like "give up, you're wasting your time".  Argh!  They make it so hard to remain positive and focused.

Rock Bottom

Today was bad. In fact I think I hit rock bottom. Not a good place to be. Let me explain a little...
During the night / early morning, (I guess the opposite of twilight, but can't think of a name for it, if it has one. (I could call it norning or might, but that is just silly)) I woke up and it felt like my throat was clagged up with phlegm. I tried to talk but couldn't which freaked me a bit. I coughed and growled and tried to clear it but to no avail. My voice came back but very quiet and husky. My actual cough was not normal either, it sounded like a hobo giving his last splutter just before falling into the dumpster for the last time. It was weird, unpleasant and bloody frightening. I tried water and gargling but nothing would shift it and my normal voice wouldn't return, just this quiet husky alter ego. Next morning my ears were still not right and the right one was deciding whether to ring or sound like the sea. My temperature was high and I felt washed out and tired. It just seemed like it was lots of little things piling up, trying to kill me off in a kind of death of a thousand cuts or something equally dramatic. I was pretty low. My wife rang the Eden centre and they said for me to come in and they'll see what they can do for my throat. That made me a bit happier but my mood was down after so many days high temperature, feeling tired, worried about what's going to happen and the steroids I had recently had had made my legs as bad as they were yonks ago etc.
Sam had to go to London for work so she rang her mum, to see if she could drop me off and she could (my mother-in-law is great). They said they wanted me to come in quickly, so we rushed in and then I was just sat there waiting for about an hour or so. A bloke next to me kept trying to talk to me, but he kept using my ringing/sea ear so I couldn't hear him, just occasionally catch his lips moving. I tried to explain the situation but I don't think he could understand me with my quiet huskiness. That was just awkward. Anyway, finally the doc sees me. I'm expecting to get straight to business and get my throat checked and maybe my sinuses or something for my ears, but no, she just starts asking me a raft of depressing questions about my worse fears about dying. She asked me what I thought the throat problem was and I said it was either mucus/fluid or the lymphoma had done something. She said most likely the lymphoma had invaded part of the larynx or one of the nerves and that was why. I asked if during radiotherapy, if the tumour regressed, could I get my voice back? Answer: The radiotherapy may do nothing (nothing like building up a bit of positiveness). ME: But if it does? Answer: Maybe ME: Could I lose the ability to speak altogether? (scared now) Answer: Maybe ME: Would that be permanent, even if this thing was cured etc Answer: Maybe. Then she went on to highly emphasise how unlikely any type of cure was and there may not be any response from the radiotherapy (what has she got against hope? and radiotherapy for that matter). Anyway my pile of depression was being added to by the second. I so wished I hadn't come. At some point I broke down in tears. It may have been during some of the questioning or at some other point, just because I felt so low. I don't know if this was registered as a point on the "help come to terms with things" ledger (good work everyone, the patient cried, they can go to their graves easier now!).
Anyway, I finally escaped. I went back to ma-in-laws had some food and then had to rush home, as Sandra (who comments here regularly) was coming to visit. Got home as she was arriving, so good timing. Spent a nice afternoon and felt a lot more perked up by the end, which was cool.
What really perked me right back up was when my wife got home. She was all smiles and wonderful and just lifted my spirits. Thanks wifey!

Getting Ready For Rad

I had my first planning appointment for Radiotherapy. Sam drove me over and Harry came too. The appointment was at 7pm, which was unusual, but left plenty of time, or would have for normal people, we got there in the nick of time. We managed to get lost in some deserted corridors before finally a friendly cleaner told us we were on the wrong level. So off we went Harry in the lead, Sam setting quite a pace and me at the back, my feeble pin legs struggling to keep up. We got there and they were waiting for us. I took my top off and was positioned on the CT scanner and some lines and dots were drawn on me. Then I was fed in and out of the machine a couple of times. When they were happy, three of the dots were turned into tattoos. Sadly dot was the only tattoo going, there was no catalogue or anything. That was that. The idea is that they can use the scan for planning where the beams go, which is then all computer controlled. It felt good that something was happening.

...And We're Back In The Room

Well, I'm back and focussed again.  After the shock of the previous news, especially when my consultant had said there were plenty of back up plans, things are settling.  I will not lose to this thing.  It is not an option.  

Feeling a bit crappy today and yesterday.  Had a couple of monster temperatures which drifted down throughout the day.  Trouble is it leaves you feeling really weak and rubbish.  I can't hear properly out of either of my ears.  The right one is sworse and just sounds like the sea, whereas the left one makes my voice sound likes its emanating from the middle of my head.  Don't know if it is the cold I had taking longer to clear than I thought or the stupid lymphoma trying to add to my list of annoyances.  It's a real pain in the bum.  Anyone who speaks to me, gets me saying what, pardon, eh several times and anyone I talk to, I boom at.  I can make my ears click by holding my nose and blowing but it hasn't yet popped back to normal (oh, please let it do that soon).

Big thanks and hugs out to everyone who has been sending me information and messages of support.  Some people have asked for the full details of what I have, well, it is called:

Non-Hodgkins Lymphoma - Large B Cell Defuse primary mediastinal (THYMUS)

Kind of rolls of the tongue really!

The news so far:  Tomorrow I will be going to Reading hospital to be measured up for some radiotheraphy which hopefully will shrink the sucked down.  I've been told it could shrink from 0 to 80%, but at the least it should be held.  Then there is sthe possibility of seeing another consultant for some RF ablation to kill off the new nasties that have moved into my organs without invite or contract.  Hopefully that will reset the clock back a bit.